Tuesday, 14 July 2009

Letting You Know...

Hi dear ones, I must make this fairly brief as I am sneaking a few moments before I go and wake my Jack to start getting ready for school. I have calmed down a little since all of this happened and had the chance yesterday to speak with my pain specialist Brian. He actually came to my home to see me which was lovely of him. Anyway the bottom line is I have actually been pretty comfortable as far as the pain goes ever since the Ketamine Driver got hooked up again and so it seems that although a lot of the medicine that was injected into my spine dispersed to the left, some of it went to the right and with the combination of the two drugs I have been able to avoid a pain crisis so far. Brian explained to me that to his way of thinking the nerves were perhaps a little inflamed and it took a couple days for this to settle and he said that although in the past when I have had Ketamine Drivers, I have quickly become immune to their effect, he has known many patients who have been able to stay on the same dosage and continue to expect good results. He thinks that perhaps with the combination of the saddle block partially working and the Ketamine that I have quite a good chance of staying fairly pain free. I must say that after having just spent another night without going into horrendous pain, I am feeling more confident and his words are making sense. Perhaps I have been lucky after all and just needed the extra Ketamine to help manage. I really don't mind struggling along with a walking frame as long as the pain is under control. So I am keeping the faith, so to speak, albeit shakily at the moment, but the longer I go avoiding a pain crisis the more confident I grow. My dear friend Lee came to be with me last night and we talked through the options which helped quite a bit. Last night I was even less confident than I am now because I wasn't sure I was going to get through the night without going into a pain crisis. My biggest fear had been that I would end up back in the amount of pain I got into last time where I just wished I were dead because it was so very bad, this and the fear that there would not be a bed available for me at hospice when this occurred and I would have to go to the Emergency Department of the hospital and they wouldn't be able to treat me like Brian was able too and I just knew I couldn't go through that again and not only go through it again but not have Brian there to knock me out for a few hours rest. This was at the root of all my fears. Brian had said that in order to avoid this he had a bed for me now at Hospice and I should probably take it and then I am safe and monitored and if I get into a pain crisis I have all the help I need at hand. Lee and I, between us, came up with the idea that I would indeed take the bed, ask David to do the distance up and back each day, as he did previously, for a period of no more than two weeks (this sat hard with me but Lee said that after all it's only two weeks). If things hadn't resolved themselves by then, well I would have to send Jack to live with David and start school up in Warragul. So I went to sleep with somewhat of a heavy heart last night thinking that I really didn't have much of a choice, I needed to be safe from that kind of pain but it would mean losing Jack from my life substantially. However, after getting through the night without a twinge I am starting to feel that perhaps none of that will be necessary. So far so good, I think I may be okay and able to stay at home after all. For a while longer anyhow. So it is not all bad news is it? In fact it's starting to seem quite bright. The pain seems to be managed by the combination of the two drugs and I can still get around, not easily mind, but I can and it beats being in a wheel chair for which I would have required rehab in order to learn how to best cope. This way, I may look a bit strange a youngish woman waddling around with a walking frame but at least I can get from A to B when I want to. I still have strength in both legs it's just I can't keep balance so well and therefore need something to grab onto. Well I will leave this here and post again soon. Take good care and thanks for the supportive comments, much appreciated. xxx

23 comments:

  1. That is encouraging news! Keeping my fingers crossed and my heart in prayer, :Debbie

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  2. Good news! I will pray for you and Jack and keep sending you kisses on Fb. You are such a wonderful lady! Dominique

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  3. Jen, this is good news. I am so relieved to read that your pain is being controlled. That is the most important thing at this point. It is all that "quality of life" issue. We want you to have that so much.

    Take care, dear heart. My prayers continue.

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  4. Dear girl, that is good news! I am relieved for you, and think of you daily.

    Hugs, Ginny

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  5. That is positive news - it is so important for your pain to be controlled. It is also good with Lee's help, you have done some planning should the situation change. One day at a time.
    Love and hugs
    K xx

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  6. Thank you Jenni for informing us. It is really good news and it confort us a lot!
    Daily thinking of you dear friend.
    Love <3
    Bete

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  7. The upside to the walker....you'll get to go to the front of the line wherever you go! My sister broke her ankle once and that's what happened with her walker! (People felt sorry for her and let her go ahead of them!) Cool!!! :D Glad to hear you're staying pain-free for the time being. Don't fret over future plans--we really only have today, all of us!!! :D LOVE TODAY!!!

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  8. I've been away for awhile and was anxious to get back to your blog to see how you're doing. Seems a bit rough going, but you're managing beautifully, dear soul. As always, you're in my thoughts and prayers.

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  9. Glad to hear the pain is more controllable and so glad that you are able to stay at home for your boys!! Hopefully the getting around will improve a bit more for you - we will say lots of prayers.
    Love and blessings.
    Nicky from Canada

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  10. So glad to hear things have turned around for you, Jen! Thanks for updating us... so fantastic you're at home with Jack :-)
    Thinking good thoughts for you always,
    Cate in California

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  11. still sending love, healing energy and strength from NE Ohio.
    xox

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  12. Hi there Jen ~ just checking in with you to say hello and send you lots of love and a big hug XXXXXX

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  13. Jen, just getting caught up here, I am praying for you daily. You amaze me girl...your attitude is so strong and your optimism is inspiring.

    i am here...always. feel free to email me any time.
    xoxo

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  14. Hi Jen
    In my thoughts and prayers and sending you love and laughter.
    Nicky from Canada

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  15. Hey Cutie! Hope you're hanging in there. I'm happy to hear you were able to spend some more time with your Jack.

    Thinking of ya!

    Love,
    Danielle

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  16. Jen,
    For some reason, every time I click on your web page my 'action is aborted' and my whole internet shuts down. I am typing fast before it happens again - only to say, much love to you, I am still here!!!

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  17. Praising God that your pain is being kept in control!!!!!

    Still praying for you sweet friend!
    Hugs!
    Kat

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  18. Hello Jen from Brisbane. I have been so inspired by your blog - well, by your courage and positivity in the face of such enormous challenges. You help me be a better mother. I'm so glad to hear your pain situation has improved and am sending my love and best wishes to you and your family.

    (Heather)

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  19. Alice - I have that problem too so now I open the site using Google Chrome and have no problems

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  20. Hi Jen...have been out of town and missed a few of your posts. You have been through so much and always seem to handle it beautifully...or so it seems to me! I am glad the pain seems under control and I would use the walky thingy too as long as it got me around. Jack sounds just like my son...loves lego and is very interested in Pompeii, Ice Age too (although not Harry Potter not sure why!!) I hope he had a great start back to school...we have a few more weeks here before they start back. Thinking of you always,

    xoxo,

    annie

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  21. Hi Jen- Just stopping by to say hello and have been thinking of you. Love, Susie

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